Telling the Sibling – Collecting Stories

On Sunday, my daughter and I went out to go grocery shopping while Nico and my wife did things around the house. As we drove by the local high-school, my daughter, 5,
said, “If we still live here that will be my highschool someday!”
“That’s right,” I replied, “And you will be able to walk or
bike there, or maybe even drive when you are old enough.”
She said, “Or my big brother Nico can drive me! Because he’s
going to go there too and he’s older than me, so he’ll be able to drive first.”
The words struck me hard. Nico, of course, has Down syndrome. He may well learn to drive someday, but it’s not very likely that he’ll be driving his sister to school at age 16. This conversation was, to me, a sign that soon I was going to have to talk to Ellie about her brother’s diagnosis. In a few weeks, they start school again, and for the first time will be in the same building. The other kids will talk about “special needs.” Who knows what the other kids will say. Ellie needs to be ready.

It’s not like she doesn’t have a clue. We’ve had the “Nico has to work hard to learn to talk,” conversation, in regards to therapy. But Nico is not medically complex, as these things go, so our lives together have not been permeated with lots and lots of doctor visits and hospitalizations, events that might have forced this conversation earlier. Ellie has never asked, “what’s wrong with Nico,” or “why can’t he really talk yet.” Life with Nico is normal, the only life she’s ever known, and it’s a damn good life. And yet, it’s time. She’s ready.

In a few days or weeks, I’ll share our conversation. First, though, I’d like to hear from all the other parents who have faced this moment. What did you say? How did it go? Let me know here in comments, on twitter, via email (lollardfish At gmail), on my public Facebook page. 
Thank you.

2 Replies to “Telling the Sibling – Collecting Stories”

  1. Erin says:

    My daughter with DS is almost 7, and her younger sister is 4. We have used the term Down syndrome with both of them for their whole lives. The both know it, and my younger daughter knows that it means that some things are more challenging for her big sister. For physical challenges, including articulation, we talk about her low muscle tone or "soft muscles." Cognition hasn't come up much, but we do talk about distractibility a lot, and one day my four year old noted that she is smarter than her sister. I just told her that she knows more about some things and her sister knows more about other things – we all have things we're good at and things that we have to work at. I don't see the need to jump too far ahead at this point, and I'm a little worried, for us, that too much information about the future would impact interactions in the present. I like the way their relationship and understanding is evolving naturally, and I will continue to be very matter of fact and answer questions as we go.

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